Guest Post: Autism Awareness Month ~ Asperger’s Syndrome

Today’s guest has actually been a reader of mine for quite some time now, she comments here from time to time and I had the privilege to meet here last year at the Romantic Times Convention where she first told me her son had Autism, more specifically Asperger’s Syndrome. Without me having to prod her into this, she emailed and asked if she could post about Asperger’s in April! So without anything more from me, here’s what she has to say:

April is Autism Awareness month and Rose has graciously allowed me to guest post on her blog to promote awareness to her audience. Thank you, Rose for giving me this opportunity to share my own experience and perhaps shed a little more light on the subject.

What is Autism/Autism Spectrum Disorder (ASD)/Asperger’s Syndrome? Essentially, these terms all describe complex disorders of brain development. The Centers for Disease Control and Prevention (CDC) state that 1 in 88 children have some type of Autism Spectrum Disorder. Each year in the United States, about 1 in 54 boys and 1 in 252 girls are diagnosed with ASD. Additionally, government statistics have shown that more children are diagnosed with Autism each year in the US than juvenile diabetes, cancer, or AIDS combined.

I have known since by son was 3 years old that something about him was “different.” He wouldn’t make or retain eye contact with me or anyone else. However, he was speaking in full, complex sentences. Adults found him charming and engaging because he could carry on a full conversation with them at such a young age. But other children could not relate to him. He was awkward in terms of his gross motor skills and coordination. Basically, he was clumsy. Anything that required hand/eye coordination was just not doable for him. He had issues with physical and social boundaries because he could not read facial expressions (thus, the lack of eye contact). At age 5 he was diagnosed with a Nonverbal Learning Disorder, which encompasses a lot of those things but it never felt “right” to me. I am by no means a professional– call it mother’s intuition or what you will, but I was sure from the beginning it was Asperger’s Syndrome. I had researched all his symptoms and behaviors and they all screamed Asperger’s to me. Sure enough, in January of 2012, he was formally diagnosed with Asperger’s Syndrome.

How is Asperger’s different than Autism or Autism Spectrum Disorder? Kids and adults with Asperger’s are usually considered “high-functioning.” They do not tend to have delays in language or cognitive development. In fact, my son tested above average in language development. He has an above average IQ. His memory and retention rate of information is astounding. You can verbally give him a list of facts and a week later he can recite those facts word for word. When he has an interest in something, he learns everything there is to know about that subject and can tell you all about it. So what are some of the signs? Of course, the only way to be sure is to obtain a formal diagnosis by a professional. Below are some behaviors that are common, but not present in all cases.

Struggling with social relationships, including limited social interaction with others

Inability to see things from another perspective or point of view other than their own

Inability to understand non-verbal communication (facial expressions, gestures) but are usually above average verbally

Having one-sided conversations; usually things that interest them personally

Lack of eye contact

Repetitive speech

Delayed motor skill development

Again, there are probably many other behaviors that are unique to individuals, but the ones listed above are some of the most common and my own son actually displays all of those. He has always had difficulty making friends, oftentimes because they don’t share the same interests. If they don’t play what he wants to he just doesn’t play. Many times in first and second grade, during recess he would go and sit with his teachers and have conversations with them instead of playing. He still doesn’t make eye contact, even if you specifically ask him to. At the age of 10, he still cannot tie his shoes, struggles with buttons and zippers and his handwriting, being brutally honest, is atrocious. I can barely read it at times. Thank goodness he has a wonderful support system at his school via teachers and counselors that let him type his work when he can.

We have been doing various types therapy on and off for several years now, since he was first diagnosed with the Nonverbal Learning Disorder. One thing that was very helpful for us was cognitive behavioral therapy. That has helped him tremendously in school. We also have the benefit of living in a city with an Autism center where he attended a camp last year to help him with social skills. And while you have to pick through information on the Internet, there are plenty of legitimate websites out there with tons of information on it.

There are so many things I don’t know about this disorder, but what I do know is that knowledge is power. I know there is no cure for this and I know that my son will have this for the rest of his life. It will challenge him in ways that I cannot possibly predict. But I am optimistic that through continued research, strides will be made. What I can do, as his parent, is to be as knowledgeable and supportive as possible so I can help him grow up to be as successful and productive as he can be. And I think that’s a commonality that all parents share—special needs children or not.

Note: A lot of the information I have shared has been obtained from Autism Speaks. To learn more about Autism, visit their site at www.autismspeaks.org.

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Thanks so much for sharing with us all! I teared up a little… You’re so right though, parental hopes and fears are pretty much universal and all encompassing. We all love our children and want them to be happy. I’m going to go kiss my own kids right now!

Thank you for sharing your story. It actually is very similar to my own except my boys have an autism diagnosis instead of aspergers. I am glad you wrote about the differences between the two diagnosis because next week I get to share my story and it will help so much to have this as a reference.
I was also glad to read that you believe your son will always have this because that is how I feel with my boys and I know there are a lot of parents with kids on the spectrum who believe there is a cure. It makes me sad that this is one of those things where there is still so much debate even between parents. Sitting in therapy waiting rooms for the last 8 years I have heard parents go at it with each other about the causes and cures and it just makes my heart hurt that there is still so much conflict about autism issues.

Hi Sarah–I’m glad to hear you’ll be sharing your story as well. I think it’s great to get the word out there and help people understand this important issue. Having been a teacher in the past, I’ve seen parents ignore a lot of things, because one of the realities of life is that no one wants to think anything is “wrong” with their child. My husband and I believe that God gave us this wonderful gift of a child and trusts us enough to take care of him and his needs, so we made peace with it early on. I am looking forward to learning even more from you next week. Thank you in advance!

I’m glad you did this post because I have a friend whose son I suspect has Asperger’s. He usually has one major interest at a time and knows all there is to know about it and can recite all those things. If he’s telling you something and he gets interrupted, he has to start all over again. I’m glad you mentioned the motor skills thing because I didn’t know that part, and this child, who is now ten, has always been slow in developing those skills. I’m not sure he can tie his shoes yet.

So here’s the thing…how would I approach his mother, who is one of my best friends? She doesn’t think there’s anything unusual about her child, although everyone else thinks so. I suspect the child’s father has Asperger’s, too

I’m glad you found the post helpful/informative. I will be 100% honest with you–if it were me, I would not say anything to your friend, regardless of how close the relationship is. If your friend was to ask for your opinion or for your observations, I think that would be different. It’s just such a sensitive topic for a lot of people, and while I’m not easily offended or sensitive about it, it’s hard to say how others would react. I hope that helps.

Thanks for sharing your story. My son with asperger’s is a freshman in high school who was diagnosed at 4.He didn’t begin speaking well until around 4 1/2 -5. He now really grasps the whole asperger’s concept and that he has it and even sits in on our annual ARD meeting at the school. He has come leaps and bounds since he was a small boy but not without challenges. Middle school was probably the hardest. Kids can be mean. I am proud of him, he has taken to the saxophone and is very talented and has high hopes with college and making a good living and owning a ferrari one day :) I love my asperger’s son more than i can even put on paper. I also saw another’s comments about a husband having it. I think my husband is an undiagnosed asperger’s case. He even agrees with me! :)

Thank you for reading it! My son doesn’t quite grasp the whole concept yet, but we’re getting there. The thought of middle school terrifies me, honestly. We have one more year of elementary school left after this one. My son, too, has high hopes for college. He wants to be an engineer or an inventor. :) Your son probably will have that Ferrari one day! If I’ve learned anything, it’s when an Aspie makes up their mind about something, it’s as good as done! It’s encouraging to hear success stories like your son, so thank you for sharing a piece of his.

Thank you so much for sharing. I know how hard everyday life is because I have four kids and two of them have autism. Well my daughter is 12 and was diagnosed two years ago with aspergers. My son is five and we found out three years ago that he has autism. There is a lot of therapy that I have to get for them. My son is still in diapers and has to still drink formula out of a bottle because of his lactose and sensory issues. I thank God everyday for the blessings of my children. He gave me more understanding and made me see the different ways of doing and learing with my two special angels. Thank you

Crystal, My twins who are now 11 were in diapers until the age of 6 and one day they just got it. I had tried and tried to teach them, but had pretty much decided to wait until they were ready and one day we came home from being out and I was checking diapers and one of the twins was dry but wanted to take his pull-up off so I let him and he ran into the bathroom sat down on the toilet and has been doing it ever since. They both still sit which is fine with me, less mess.
Thankfully they can eat regular food but they are very, very picky and have a lot of sensory issues when it comes to the texture of food. They have been receiving Feeding Therapy for about 4 years now to try and broaden their diets.